Welcome

Welcome to the POZ/AIDSmeds Community Forums, a round-the-clock discussion area for people with HIV/AIDS, their friends/family/caregivers, and
others concerned about HIV/AIDS. Click on the links below to browse our various forums; scroll down for a glance at the most recent posts; or join in the
conversation yourself by registering on the left side of this page.

Privacy Warning: Please realize that these forums are open to all, and are fully searchable via Google and other search engines. If you are HIV positive
and disclose this in our forums, then it is almost the same thing as telling the whole world (or at least the World Wide Web). If this concerns you, then do not use a
username or avatar that are self-identifying in any way. We do not allow the deletion of anything you post in these forums, so think before you post.

The information shared in these forums, by moderators and members, is designed to complement, not replace, the relationship between an individual and his/her own
physician.

All members of these forums are, by default, not considered to be licensed medical providers. If otherwise, users must clearly define themselves as such.

Forums members must behave at all times with respect and honesty. Posting guidelines, including time-out and banning policies, have been established by the moderators
of these forums. Click here for “Am I Infected?” posting guidelines. Click here for posting guidelines pertaining to all other POZ/AIDSmeds community forums.

We ask all forums members to provide references for health/medical/scientific information they provide, when it is not a personal experience being discussed. Please
provide hyperlinks with full URLs or full citations of published works not available via the Internet. Additionally, all forums members must post information which are
true and correct to their knowledge.

I know it's been a while. I've just been trying to enjoy the summer and not think about HIV. Well, I went in for my labs today, and my latest results are posted in my signature and I'm a little worried...

My viral load almost tripled. Also, my cd4 percentage went down to what seems to be AIDS level. I don't have any symptoms are anything, except for a few subtle changes in digestive patterns.

I know I should go ahead and start medication, but I have so many fears and worries about it. It's like once you start, there's no going back. I guess it's a moment of acceptance, and it just hits you -- man, I really have HIV for the rest of my life.

Also, I'm insured by my employers group health care. I know they can't find out, but what if I lose my job, will I have to go on drug assistance? I won't be able to afford thousands a month for medication. Would there be a break in my treatment due to this? I live in VA / MD, and I believe there is a waiting list here.

Oh well, I'm just ranting about my fears... i'll shut up now. But maybe someone out there is listening.

1) Is your disease progressing? Yes, marginally. The number to look at for starting treatment is the absolute cd4, not the others, and yours hasn't dropped so while you should wrap your head around eventually starting, I don't see the need to press the panic button today.

2) I think the waiting list in Virginia has gone down to hardly anyone, but why worry about that right now if you don't have to? That's just finding things to worry about. Basically if you go on treatment and lose your job, if you qualified for ADAP then yes that's the option you'd use to continue treatment.

I can relate to the fear of going on meds. I was diagnosed just over a month ago and I started meds last week. My CD4's have been anywhere from 360's to high 500's but my VL up as high as 9 million as of two weeks ago which threw me around the bend.

I decided to go on meds right away. It made it all the more real for me too which I've posted about, but given that it's something I knew I would eventually have to do anyway, I figured sooner rather than later was the best option. Plus I've been been having a lot of HIV related symptoms that are making me sick..no OI's or AIDS as such but just my body fighting like a SOB against the virus making me feel super crappy. That and the latest research suggesting that the sooner one is on meds after initial infection can have long term benefits to overall health.

I'm having a few minor side effects but nothing major and I'm pretty sure this will go away within another week or so.

I know it's scary and it does make it more, "real" but i'm finding after almost a week of taking the meds, I just use a pill box and throw the meds in with my vitamins and take it like anything else. I try and not make a big deal of it. It seems to be helping.

I'm not sure about your insurance questions as i'm not in the US, but there are a lot of folks on here that can probably steer you in the right direction.

Don't let your fears keep you from getting the medical attention you deserve.

I know I should go ahead and start medication, but I have so many fears and worries about it. It's like once you start, there's no going back. I guess it's a moment of acceptance, and it just hits you -- man, I really have HIV for the rest of my life.

What exactly is the fear and worry? Spell it out so people here can dissuade you with facts and experience.

You have had HIV since the day the virus got hold of your body. Whether you needed HAART or not was only secondary. YOu had it sine then and by most accountings, you'll have it forever. Its a manageable disease and has been for a long time, by virtue of the existence of good medicine.

Also, I'm insured by my employers group health care. I know they can't find out, but what if I lose my job, will I have to go on drug assistance? I won't be able to afford thousands a month for medication. Would there be a break in my treatment due to this? I live in VA / MD, and I believe there is a waiting list here.

These fears seem more concrete and if you haven't already figured out this aspect of living with HIV - how am I going to afford and access care and treatment - now is the time.

Logged

“From each, according to his ability; to each, according to his need” 1875 K Marx

Thanks meech for the stern, but kind words... it's great to have someone to talk to about my deepest fears. I still haven't told a soul except for my partner that I'm poz. I know that when I start meds, that may have to change though... seems my whole world will change.

Quote

To my mind, this is not evidence of disease progression, it's evidence of one low CD4% test which is unimportant in the context of a CD4 count over 500 on 3 consecutive tests.

I think my percentage went down due to an increase of lymphocytes... My lymphocytes have jumped to 62%, which makes me think I have some sort of infection going on or some other funny business. In theory, if the cd4 count stayed constant, but another type of white blood cell increased, the cd4 percentage would drop. So, I think this might be why you're right newt. Thanks for your input.

As a side note, my partner did just recently test positive for herpes, and I think I may have contracted it from him, which MIGHT explain the tripled viral load, and might explain the high lymphocytes. Furthermore, I've noticed barely visible, painless, pencil eraser sized light red spots all over my body. They are hard to see because they are so light, and I'm very hairy. But when I noticed them on my genitals, I became worried. Not sure what to make of this. Maybe this is due to supplements I'm taking... NAC, Fish Oil, organic liquid vitamins? IDK.

Furthermore, I've noticed barely visible, painless, pencil eraser sized light red spots all over my body. They are hard to see because they are so light, and I'm very hairy. But when I noticed them on my genitals, I became worried. Not sure what to make of this. Maybe this is due to supplements I'm taking... NAC, Fish Oil, organic liquid vitamins? IDK.

Hi survivor703 , Hope you are doing well

I had SPOTS ! ....................... Then went on MEDS 18 years later . 8 years down that road and all is well .

As for being outed when starting MEDS ? I know people that are on HIV meds and there is no fear because Pharmacy people do not have big mouths

I would ask your doctor what he thinks , I know I still get what my Mother

called Roesiollies < SP > , Red spots ! Not often thou .

Be well .

Carl

P.S. : I did have spots that were a fungus !!! When I got hot they would turn red ! I had forgotten about them , They were white and raised . Nizoral <sp> In a cream lotion applied sparingly . It dries up the skin and the rash falls off

Thanks meech for the stern, but kind words... it's great to have someone to talk to about my deepest fears. I still haven't told a soul except for my partner that I'm poz. I know that when I start meds, that may have to change though... seems my whole world will change.

Hey you still haven't spilled on what your deepest fears are. Try to elaborate....

Obviously affording medical care and HAART are challenges. What are the other fears, though? Most people have pretty good experience with HAART these days.

How is your whole life going to change? It already changed when you got HIV. When you get the financing in order for the treatment, I don't see other negatives, about going on HAART. There are advantages.... Can you imagine what the advantages are?

Logged

“From each, according to his ability; to each, according to his need” 1875 K Marx

What exactly is the fear and worry? Spell it out so people here can dissuade you with facts and experience.

You have had HIV since the day the virus got hold of your body. Whether you needed HAART or not was only secondary. YOu had it sine then and by most accountings, you'll have it forever. Its a manageable disease and has been for a long time, by virtue of the existence of good medicine.

These fears seem more concrete and if you haven't already figured out this aspect of living with HIV - how am I going to afford and access care and treatment - now is the time.

Mecch is right on. Please consider this. I had HIV long before I was diagnosed. When I was, eventually dxd, it's was AIDS defining. CD 8 and VL 500,000. That being matter of fact, two months on Atripla had my labs to HIV levels (actually undetectable and CD 4 was in the respectable 300's). While I can understand your concern over your labs, panic (fear) over taking meds is a problem.

This disease is manageable and while you have been doing that without meds, perhaps you need to start. At any rate, it's time to talk with your doc and try your best not to panic. Fear and panic can and will destroy reason.

Logged

Diagnosed in May of 2010 with teh AIDS.

PCP Pneumonia . CD4 8 . VL 500,000

TRIUMEQ - VALTREX - FLUOXETINE - FENOFIBRATE - PRAVASTATIN - CIALIS

Numbers consistent since 12/2010 - VL has remained undetectable and CD4 is anywhere from 275-325

Of course it is. I should have known better when I caught HIV a couple years back. Lived through all the breaking news through the 90's and after. And still I had lots of unfounded fears and panic about HAART. That's why its helpful for someone new to lay out what exactly the fears are, to see if anything can be clarified and help anxiety go down.

Logged

“From each, according to his ability; to each, according to his need” 1875 K Marx

"Furthermore, I've noticed barely visible, painless, pencil eraser sized light red spots all over my body. They are hard to see because they are so light, and I'm very hairy. But when I noticed them on my genitals, I became worried. Not sure what to make of this. Maybe this is due to supplements I'm taking... NAC, Fish Oil, organic liquid vitamins? IDK. :"

I have no idea of course, but a couple things come to mind..For example, right now all over my behind and upper thighs, I have folliculitis which freaked me out. I've never had this before. It's red dots all over the place. http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001826/

In taling to the ID doc he said it was yet another symptom of a very high VL and just something that is related to all the immune system stuff going on atm. He gave me a cream which seems to be helping.

All in all, i'm having skin issues all around. Dry skin, psoriasis on my scalp and face and what i mentioned above. I've read on this forum and other places skin issues are common in the beginning.

survivor, I had the exact same fears like you said. Two months into starting treatment I can tell you - it is not as bad as you think. In fact you will feel marginally better that you're in control of the virus. Just take it one day at a time. As someone pointed out, there are public assistance programs in case you lose your insurance.

Well, my fears are simply that once I start medicine that I will fail at taking the medicine at the same time every day for the rest of my life. If I understand correctly, that's what I need to succeed. I'm also afraid because I’m a big guy and they say the virus causes inflammation… and now I’m thinking I could have a heart attack or something any day now. I have had some aches come and go, and I think that’s because of hiv inflammation… I’m not sure though. Like the other day, my elbow felt like I had banged it into a brick wall, and I couldn’t lie on it or anything, but the truth is I there was no trauma to my elbow.

It was my hope that I would be able to keep the virus at minimum levels and maintain a good cd4 count while for as long as possible, but it seems like that time is coming to an end quickly. So now I’m trying to convince myself to go ahead and start the meds… and I’m considering which med to start with. An internet friend of mind said to start with a classic ARV treatment, not like the quad or atripla, but a less popular (but potent one), so that I wouldn’t have to worry about running out of options later…

And I just fear losing it all and having to go on public assistance… I mean, look at our economy. It’s scary. And it’s very unstable. But I guess I just have to jump out in faith. Things are very stable with my job right NOW, but I’m thinking about years into the future… you know?

An internet friend of mind said to start with a classic ARV treatment, not like the quad or atripla, but a less popular (but potent one), so that I wouldn’t have to worry about running out of options later…

lol... well, his doctor told him that. he's on nevirapine and avocomb? says he's doing fine. and when/if he develops resistance, he'll consider atripla or something better. I'm leaning towards the quad pill myself, but I'm not sure. I need to do some research. Any advice is greatly appreciated.

I think it's easy to overthink the choice -- any of the preferred regimens in the most current NIH HIV treatment guidelines will suppress HIV. So taking something new like the quad pill versus an older one like atripla, is the amount of data on hand that makes your comfortable, meaning it's well established now exactly what the side effects are from atripla, but the quad pill is new so there is less data for a shorter period. This bothers some people, others it doesn't, and for example the quad pill (stribild) though FDA approved is only on the "alternative" list thus far not the "preferred" though assuredly this will change at some point.

Then the question is how many pills you think you can handle. Everyone thinks the all-in-one is better for them, but there was just a study out this week that I saw where it shows no significant difference in adherence levels versus a non all-in-one. You end up getting used to a regimen. You seem very worried about a lot of things, so maybe until you go a med regimen you should force yourself to adhere to taking a multi-vitamin every day at a set hour like with every breakfast.

Is your doctor recommending the quad pill to you or something else? Also, should I assume that your doctor has run the appropriate resistance testing on your at this point?

Generally speaking, I take the advice on these forums with a degree of respect and sometimes with a grain of salt. After reading the forums, there are some folks whose opinions might weigh a bit heavier then others (those on the same regimen as I am, similar dx experiences etc). I use these forums as a guide for questions to ask my ID doc or, in some cases, to keep from having to call the doc for something minor or a general question.

This all being said, there simply is no replacement, in my opinion, for the consultation and advice of an ID doc.

Logged

Diagnosed in May of 2010 with teh AIDS.

PCP Pneumonia . CD4 8 . VL 500,000

TRIUMEQ - VALTREX - FLUOXETINE - FENOFIBRATE - PRAVASTATIN - CIALIS

Numbers consistent since 12/2010 - VL has remained undetectable and CD4 is anywhere from 275-325

lol... well, his doctor told him that. he's on nevirapine and avocomb? says he's doing fine. and when/if he develops resistance, he'll consider atripla or something better. I'm leaning towards the quad pill myself, but I'm not sure. I need to do some research. Any advice is greatly appreciated.

Ive thought about that as well. If you go on a new med and build resistance, will/could that burn out more options than an older med/regimen?

The majority of patients change regimens due to side effects issues, NOT because of adherence (and thus resistance) issues. Why do people insist on worrying about things before they occur? This only serves to increase your anxiety levels and is not productive.

The majority of patients change regimens due to side effects issues, NOT because of adherence (and thus resistance) issues. Why do people insist on worrying about things before they occur? This only serves to increase your anxiety levels and is not productive.

I didn't know... I've read so many web sites and I kept seeing that term come up... it's painted a very bad picture in my mind of some patients trying every drug out there, and finally on the last regimen, which I believe is a shot? while hoping and praying that the shot works for the rest of their life.

But my ID doctor (and you) paint a much better picture, one that I chose to believe in. He seems to believe that I can remain on the same regimen for the rest of my life... he hasn't seen resistance in his practice at all. Says it's unheard of. This is what I want to believe.

And no, my ID doctor did not suggest the quad pill. He did suggest it a few months back when I first got diagnosed, but I wasn't mentally ready for meds yet. He mentioned possibly having me to participate in a clinical trial that his group was doing on the quad. He seems to think highly of it.

I think I'll try my luck with atripla. We will chose on my next visit, which is in 3 weeks.

I didn't know... I've read so many web sites and I kept seeing that term come up... it's painted a very bad picture in my mind of some patients trying every drug out there, and finally on the last regimen, which I believe is a shot? while hoping and praying that the shot works for the rest of their life.

This is why it's often counter-productive for a newly diagnosed person to read things on the internet.

Resistance issues were more common in the long-term survivor group, because before HAART was the standard in late 1996 patients were put on just one drug, or two drugs from the same class. So they ultimately developed a lot of resistance issues. This is all why researchers had to come up with HAART. Then over the next decade they had to develop even more drugs for people that had developed resistance issues, simply because when HIV/AIDS treatment was new nobody knew quite what was going on.

Personally I was, unfortunately, one of those patients. I was on my last regimen available, or at least next to last just six years ago. But since that time lots more new medications have arrived (and there are more to come), so even I have a lot of options left.

But you aren't me so you shouldn't have to have those worries, even if you fuck your entire regimen up and have to switch to another one, you won't be ANYWHERE near your last regimen.

This is why it's often counter-productive for a newly diagnosed person to read things on the internet.

Miss P is, once again, right on. WEB MD (for example) caused me more stress and concern than was EVER necessary. Conversely, you can peruse thousands and thousands of websites and comes up with differing opinions about everything.

Logged

Diagnosed in May of 2010 with teh AIDS.

PCP Pneumonia . CD4 8 . VL 500,000

TRIUMEQ - VALTREX - FLUOXETINE - FENOFIBRATE - PRAVASTATIN - CIALIS

Numbers consistent since 12/2010 - VL has remained undetectable and CD4 is anywhere from 275-325

Well, my fears are simply that once I start medicine that I will fail at taking the medicine at the same time every day for the rest of my life. If I understand correctly, that's what I need to succeed. I'm also afraid because I’m a big guy and they say the virus causes inflammation… and now I’m thinking I could have a heart attack or something any day now. I have had some aches come and go, and I think that’s because of hiv inflammation… I’m not sure though. Like the other day, my elbow felt like I had banged it into a brick wall, and I couldn’t lie on it or anything, but the truth is I there was no trauma to my elbow.

OK, its wonderful you have clarified and got specific.

1) For the coming years, it seems clear we will be on daily medicine, but there has been talk for a few years that weekly or monthly dosing is imagineable.

2) When you first start your HAART medicine, precise timing is important. Even that varies, however, depending on your exact combination, and your doctor's philosophy about this. After someone is undetectable for awhile, and depending on the exact combination, some HAART combos do not require strict, always at the same time, dosing. Your doctor will explain this. Also, eventually, when you are undetectable, 100% adherence is not critical, rather a few missed doses a year are perfectly fine.....

3) Yes, HIV causes inflammation. But being on HAART will reduce your body's stress and reduce your inflammation. These are technical issues, you shouldn't be worried about them everyday and you shouldn't extrapolate, you can discuss these concerns with your doctor, based on your experience.

It was my hope that I would be able to keep the virus at minimum levels and maintain a good cd4 count while for as long as possible, but it seems like that time is coming to an end quickly. So now I’m trying to convince myself to go ahead and start the meds… and I’m considering which med to start with. An internet friend of mind said to start with a classic ARV treatment, not like the quad or atripla, but a less popular (but potent one), so that I wouldn’t have to worry about running out of options later…

And I just fear losing it all and having to go on public assistance… I mean, look at our economy. It’s scary. And it’s very unstable. But I guess I just have to jump out in faith. Things are very stable with my job right NOW, but I’m thinking about years into the future… you know?

Hey, everyone has their own genetics to deal with. I only made it a few months without HAART and in retrospect it would have been better for me to start right away, during acute infection.

So, there's not much to do about when you need to start. Water under the bridge.

4) What everyone else said - don't worry about side effects, until you get them... Nobody can predict what you might get, if any at all.

5) Don't take offhand second hand info about what combo is right for you. Your EXPERT doctor is going to recommend the combo that suits a number of your own, special, personal, needs... So you are going to negotiate with him/her which one will be the first combo, and just try it out. If it doesn't work out, you will switch. Thats the way we all do it.

__________

You are going to be adherent. You are going to be happy when you are undetectable. Great relief emotionally, psychologically, and for your body!! There are benefits for your partner(s), as well.

____________

Affording it. And projecting into an uncertain economic future, will I always have access..?? Join the club here. Most of us have to deal with these kinds of challenges and thus also these fears. Not everyone, of course, has the same hardships to deal with in maintaining access to care.

On this matter, you can start asking very specific questions here, and also it is an area in which local help, and peoples experiences accessing care in your locale, are very helpful and maybe essential. Here, you need to speak to social workers and or people with HIV in your area and learn how its done for someone in your situation.

There are great challenges to be met here, and some are or can be life changing, yes.

Logged

“From each, according to his ability; to each, according to his need” 1875 K Marx

Fear eats the soul. On balance meds reduce the risk of heart attack, while uncontrolled HIV increases it. There you go. Your numbers are good. You have time to decide. The internet is perhaps less of a friend than your doc in this situation.

well thanks meech, and Miss P for the insight... this helps change my perspective on things. I have a brighter outlook now. and thanks everyone else for your kind words as well. I hope to live to a "ripe old age" as my doctor calls it.